SCDC Update

Happy Almost World Sickle Cell Day (June 19)!

On Friday, June 19, World Sickle Cell Day (WSCD), join the Sickle Cell Disease Coalition (SCDC) in spreading awareness about the importance of giving blood to ensure there is sufficient supply for individuals living with sickle cell disease (SCD).  This issue is incredibly critical now given the decline in donations amid the pandemic. We are especially concerned about an adequate blood supply for individuals with SCD for whom transfusions are life-saving and prevent complications. Click here for our WSCD Media Toolkit and tag us @ConquerSCD

Shine the Light on Sickle Cell - June 19, 2020

On June 19, 2020, the Sickle Cell Disease Association of America (SCDAA) and SiNERGe will “Shine the Light on Sickle Cell” to bring attention to sickle cell disease (SCD) on World Sickle Cell Day. You are invited help to organize and/or participate in a Shine the Light on Sickle Cell event as people from around the globe host/participate in programs to increase awareness of SCD disease and speak out for a cure.  Learn more about how you can help spread the word about the campaign and share information about your event.

SCDAC Commemorates Sickle Cell Awareness Day - A National Sickle Cell Conversation Without Borders

The Sickle Cell Disease Association of Canada (SCDAC) is inviting you to participate in its first national Zoom conversation to commemorate Sickle Cell Awareness Day on Friday, June 19, from 5:00 p.m. to 7:00 p.m. ET.  The program will feature individuals living with the disease and their caregivers from across the country. The nine panelists will talk about their experience, the challenges they have encountered, and the ways they are making their lives better.  There will also be surprise special guests!  Everyone is welcome to join.  Register here.

Sickle Cell in My Language

The Global Alliance of Sickle Cell Disease Organizations (GASCDO) is hosting a World Sickle Cell Day campaign with its member organizations from around the world to highlight the global impact of sickle cell disease (SCD). The campaign will feature individuals living with SCD from their respective countries sharing what it means to be strong living with SCD, and what ‘sickle cell disease’ is in their language.  Join the many voices coming together to raise awareness on World Sickle Cell Day.  To participate in this campaign visit here, submit your photo and other details and you may be featured! To learn more about GASCDO, visit http://scdglobal.org. For inquiries, email contact@scdglobal.org.

SCAF Celebrates World Sickle Cell Day with New Webinars

The Sickle Cell Aid Foundation (SCAF) announces a full lineup of webinars for World Sickle Cell Day. Webinars this week include:

• Wednesday. June 17 at 11:00 a.m. West Africa Time (WAT) – Sickle Cell Retinopathy
• Thursday, June 18 at 11:00 a.m. (WAT) – Surviving COVID-19 with Sickle Cell Disorder
• Friday, June 19 at 11:00 a.m. (WAT) – Nutrition and Sickle Cell Disorder

For more information on all the webinars, including speaker and moderator information, and to register, please visit SCAF’s World Sickle Cell Day website: http://scaf.org.ng/wscd2020/

GASCDO Presents Webinar on Current Advocacy Work in Sickle Cell Disease

The Global Alliance of Sickle Cell Disease Organizations (GASCDO) is hosting a webinar for World Sickle Cell Day entitled Current Advocacy Work in Sickle Cell Disease (SCD) – The Global Perspective.  The program is scheduled for June 19 from 8:00 a.m. to 10:00 a.m. ET.  The program will highlight current SCD advocacy work from across the world. Panelists will be presenting from Africa, South/Latin America, Middle East, South Asia, Europe and North America.  Register here by June 17.

Australian Sickle Cell Advocacy Presents Webinar on The Psychosocial Effects of Sickle Cell Disease

Due to the COVID-19 pandemic, the world has adjusted to the new reality of social distancing. This year, the Australian Sickle Cell Advocacy, Inc. presents the first-ever online panel discussion on World Sickle Cell Day under the theme: “The Psychosocial Effects of Sickle Cell Disease.” The program is scheduled for June 19 from 7:00 p.m. 9:00 p.m. Australian Eastern Standard Time and will address the effects of living with SCD on education, relationship friends/siblings, social interactions, family adjustment, isolation, and stigmatization. The global panel includes an adult hematologist, pediatric hematologist, and a mental health expert. The panel also includes caregivers and SCD advocates.  The panelists will share their experiences and expert advice as health care providers, and advocates. Register for the program here; and email questions to info@aussicklecelladvocacy.org.

***SCD and COVID-19***

Sickle Cell Disease (SCD) and COVID-19 Resources  

The following links are frequently updated with timely information for the community and providers. 

• American Society of Hematology COVID-19 Resources 
  • Checklist for SCD Patients Presenting to the Emergency Department (ED) During Pandemic – Assists in the evaluation of individuals SCD in ED presenting with symptoms concerning for COVID-19 and/or complications of SCD, with SCD-specific considerations for evaluation and treatment.
  • Frequently Asked Clinical Questions on COVID-19 and SCD
• Secure-SCD Registry, Surveillance Epidemiology of Coronavirus (COVID-19) Under Research Exclusion – Captures pediatric and adult COVID-19 cases that are occurring across the world in individuals living with SCD.
• SCDAA’s Advisory and Resources on SCD and COVID-19 for Community and Providers 
  • Health Alert for People with Sickle Cell Disease and their Caregivers
  • Provider Advisory:  An Outline to Decrease Burden and Minimize Morbidity – Guidance for the acute and chronic disease management of individuals with SCD.
  • Sub-Saharan African Provider Advisory
• Sickle Cell Community Consortium Resources to Address Challenges of Pandemic – Resources for the community focused on social services, mental health support, and education support.
• Be The Match Offers Counseling for Sickle Cell Warriors During Pandemic – Free counseling services to sickle cell warriors and their loved ones.

***Other SCD News***

IASCNAPA Scholarship Applications Now Available

The International Association of Sickle Cell Nurses and Professional Associates’ (IASCNAPA) Steven Christy and Christine H. Johnson Scholarship funds were established to provide stipends to people with sickle cell disease (SCD) attending post-secondary education.  Steven Christy battled SCD and was a staunch SCD advocate during his life, and Dr. Christine H. Johnson was an SCD provider and advocate her entire medical career.  Scholarships were established in their honor by family and friends. To apply for an IASCNAPA scholarship, go to www.iascnapa.org.

Terumo BCT Releases “Smart Blood Toolkit”

Terumo BCT released a “Smart Blood Toolkit”to assist sickle cell disease (SCD) providers in the best practices for blood management and achieving desired HbS targets during automated red blood cell exchanges.  This timely information was released to address the ongoing concerns regarding the national blood supply and potential risk for individuals with SCD who receive chronic transfusions.

CDC’s Sickle Cell Data Collection Program Announcements

The Centers for Disease Control and Prevention’s (CDC’s) Sickle Cell Data Collection (SCDC) program determines the number of people living with sickle cell disease (SCD) and monitors changes related to their health over time. 

• Website Update: CDC redesigned its SCDC program website with a cleaner, more streamlined layout and improved navigation.
• Webinar: Stay tuned for a webinar about the importance of incorporating a palliative approach to SCD care on Wednesday, July 1, 2020. Join the email list to receive announcements about upcoming webinars.
• World Sickle Cell Day: CDC is sharing personal stories about SCD, blood donation resources, and videos about the many faces of SCD on June 19. Stay updated by following us on Twitter at @CDC_NCBDDD.
• Newsletter: Subscribeto The Bloodline to stay in the know about SCDC activities, data, presentations, and more. Past issues are available here.

***Upcoming SCD Events***

Join the SickleARC’s Gene Editing Workshop

Join the SickleARC’s Gene Editing Workshop:  Advanced Therapy, Research and Cure – Human Genomics for Gene Therapy in Africa on Thursday, June 18, from 9 a.m. to 1 p.m. ET.  Register in advance here.

Join SCDAA’s 7th Annual Walk with the Stars

The Sickle Cell Disease Association of America (SCDAA) is hosting the 7th Annual Walk with the Stars Kickoff Party on Thursday, June 11, 2020, from 6:30 p.m. to7:00 p.m. ET. Walk with the Stars is one of SCDAA’s largest events dedicated to finding better treatments and a cure for sickle cell disease (SCD). Every dollar that you raise goes towards preventing the complications of SCD through awareness, education, advocacy, and research.  Join SCDAA virtually by registering here.